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It Is Not A Hospital Discharge… It Is A Community Admission PowerPoint PPT Presentation


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It Is Not A Hospital Discharge… It Is A Community Admission. It Is More Than Health Care ... Fitting the pieces together. Socia l. Literature. $. Dev/Educ. Technol. OVERVIEW. Medical Home for CWD - a little different Working with the educational system

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It Is Not A Hospital Discharge… It Is A Community Admission

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It is not a hospital discharge it is a community admission l.jpg

It Is Not A Hospital Discharge…

It Is A Community Admission


It is more than health care fitting the pieces together l.jpg

It Is More Than Health Care...Fitting the pieces together

Social

Literature

$

Dev/Educ

Technol


Overview l.jpg

OVERVIEW

  • Medical Home for CWD - a little different

  • Working with the educational system

    • IFSP and early intervention programs

    • IEP and the education system

    • ITP and transition to adulthood

  • Accessing community resources

    • parent educ, advocacy, support

    • community agencies

    • respite and recreation

    • financial

  • Educating the PCP


  • Special kids special skills not really l.jpg

    Special KidsSpecial Skills ???(not really)


    But a few more l.jpg

    But, a few more....

    • assessment tools

    • team members

    • community supports

    • minutes

    • dollars


    Medical home l.jpg

    Medical Home

    • traditional pediatric care

    • emphasizes a mutual relationship

    • broad health care plan

      • medical (traditional and non-traditional)

      • developmental

      • behavioral

      • educational

      • social

  • long range (infancy to adulthood)


  • Components of any medical home mh l.jpg

    Components of any Medical Home (MH)

    • accessible

    • continuous (age & spectrum of care)

    • compassionate

    • comprehensive

    • coordinated

    • culturally competent

    • family-centered


    Slide8 l.jpg

    Child/Family, includes family support resources

    Pediatrician and other medical providers

    School, includes early intervention

    Community-Based Team

    Insurance providers/financial resources

    Religion /spiritual supports

    Social Services, includes mental health


    Cwd additional components l.jpg

    CWD: Additional Components

    Broader array of assessment tools

    Awareness of community resources

    Team Skills vs Care Coordination Skills:

    • medical and surgical subspecialists

    • social workers and home health nurses

    • therapists, orthotists, prosthetists, DME vendors

    • intervention specialists, teachers, ed diagnos

    • counselors, psychol, behavior mgmt specialists

      Advocacy Skills:

    • authorizations for medical care

    • authorizations for school related services

    • financial assistance programs

    • public policy issues


    The standard assessment l.jpg

    The “Standard” Assessment

    • History

      • Chief complaint

      • History of present illness

      • Pregnancy and neonatal history

      • Family history

      • Developmental and school history

      • Review of systems

  • Physical Exam

  • Screenings

    • hearing and vision

    • growth and development

    • dental

    • Hct, etc


  • Beyond the standard assessment l.jpg

    Beyond the “Standard” Assessment

    • Developmental

    • Socio-emotional

    • Functional

    • Educational

    • Transitional


    Developmental l.jpg

    Developmental

    • AAP emphasis on the developing brain

    • Developmental monitoring

      • Screening

      • Surveillance

      • Assessment

  • Goal: Early referral to an early intervention program (EIP)


  • Screening tools l.jpg

    Questionnaires

    PDQ

    AAP

    EIP

    Customized

    Observation

    Denver - II

    ELMS

    CAT/CLAMS

    BINS

    Dev Profile - II

    Screening Tools


    Surveillance l.jpg

    Surveillance

    • The art of being suspicious

    • Parental concerns are valid!!!

    • Continuous monitoring at every visit

      • Pre-printed milestone checklists

      • Developmental milestone tables (texts/articles)

      • Use of standardized tools to validate suspicions

  • Developmental age for eachstream

    developmental age

    chronological age

    > 85% is normal

    70 - 85% is suspect

    < 70 %is abnormal


  • Examples l.jpg

    EXAMPLES

    10 mos old w/ GM skills solid to 8 mos

    8 mos = 80%

    10 mos

    10 mos old w/ GM skills solid to 6 mos

    6 mos = 60%

    10 mos


    Developmental assessment l.jpg

    Developmental Assessment

    • Targets children at risk

    • Time consuming

    • Requires training and expertise

    • Often performed by a team

    • Assesses quality as well as skill level

    • Addresses etiology (neuro, genet, etc)


    Functional assessment l.jpg

    Functional Assessment

    • Follows developmental assessments

    • Assesses the child’s ability to perform skills independently w/wo devices

      • Mobility

      • Communication

      • Self Help: feeding, dressing, hygiene

  • Standardized tools

    • Vineland

    • WeeFIM

    • PEDI

    • AAMR


  • Early intervention programs l.jpg

    Early Intervention Programs

    • Available to infants from the time of diagnosis until age 3 years

      • Known disability

      • Developmental delay

      • At risk for disability or delay

  • Promote development & family function

  • Mandated by the IDEA entitlement

  • Large menu of services

    • parent education, empowerment, advocacy

    • habilitation services (OT, PT, ST, behav mgmt)

    • assistive technology

    • respite, transportation, etc


  • Evolution of iep s l.jpg

    Evolution of IEP’s

    • Privately funded . . . . Publicly funded

    • Open referral . . . . . . Geographic assign

    • Multidisciplinary . . . . Transdisciplinary

    • Center-based . . . . . . . Home based or DCC

    • Child centered . . . . . . Family centered

    • IDP. . . . . . . . . . . . . . . . .IFSP


    Eip pediatrician s role l.jpg

    EIP:Pediatrician’s Role

    • Referral - early, don’t wait for DX

      - “48 Hour Rule”

    • Medical assessment

      • etiology vs co-existing disorders

      • subspecialty consultations

  • Care Coordination

  • Development of the IFSP

  • Authorizations for treatment

  • Education of providers re: diagnosis

  • Communication and monitoring


  • Transition to school l.jpg

    Transition to School

    • Occurs at age three years

    • Individual Education Plan (IEP)

    • Based on an educational assessment

    • Physician advocacy

      may be necessary


    Educational supports l.jpg

    Educational Supports

    • Re-authorization of the IDEA (1997)

    • Entitlement: DX 21 yrs

    • Special education techniques & staff

    • Related services (PT, OT, ST, RN)

    • Assistive technology

    • Extended year services

    • Non-educational services

    • Transitional services


    Components of an iep l.jpg

    Components of an IEP

    • Current level of functioning and DX

    • Goals and objectives for school year

    • Related services needed to goals

      • special education

      • therapy (PT, OT, ST) and nursing

      • assistive technology devices

  • Frequency, duration and provider of related services


  • Components of an iep24 l.jpg

    Components of an IEP

    • Placement (LRE philosophy)

    • Supports needed for LRE placement

    • Transitional services - if > 14 years old

    • Extra curricular activities

      • Respite (“non-education funds”)

      • Extended year services

      • Recreation

  • Monitoring of progress

    • Tools

    • Frequency

  • Signatures


  • Physician s role in the iep l.jpg

    Physician’s Role in the IEP

    • Authorize for svc via medical categories:

      • Other Health Impaired (ADHD, CHI, SZ)

      • Orthopedically Handicapped

      • Vision and/or Hearing Impaired

      • MR diagnoses (Down, FXS, William's)

  • Advocate for psychometric testing

  • Evaluate for co-existing health concerns…..authorize medical Rx

  • Coordination of services

  • Communication and educ (med<-- >EIP)

  • Advocate for related svc & assist technol


  • Slide26 l.jpg

    Medically-based Therapy

    • health care service requiring physician Rx

    • requires insurance/HMO pre-authorization

    • addresses periodic life issues

      • new equipment (braces, crutches, W/C)

      • post surgical

      • transition to oral feeding

        Educational-based Therapy

  • provided at no cost (gov subsidized)

  • usually consultative

  • addresses devel and educ milestones

  • driven by the IFSP services at home

  • driven by the IEP services at school


  • Assistive technology l.jpg

    Assistive Technology

    • Purpose:to prevent (or decrease) deformity

      to increase function

    • Timing is critical and depends on DD

    • Low tech vs. high tech devices

      • Positioning

      • Mobility

      • ADL (activities of daily living)

      • Communication

      • Educational

      • Recreational

  • Service animals


  • Assistive technology clearing houses l.jpg

    Assistive TechnologyClearing Houses

    • Abledata

    • RESNA

    • Alliance for Tech Access

    • TRACE


    Computer technology l.jpg

    Computer Technology

    • Apple: 1-800-600-7808

    • IBM: CAT (Center for Adapted Tech)

      Easter Seals in Colorado

      Phone: 1-303-233-1666

      Fax: 1-303-233-1028

    • RJ Cooper Software

      24843 Del Prado

      Dana Point CA 92629


    Service dog information l.jpg

    Service Dog Information

    • Houston: (281) 497-2505

    • Austin: (512)891-9090

    • Website: www.THSD.com


    Transition l.jpg

    Transition

    School Work

    Home Community

    Pediatric Adult Care Centered Care


    School work l.jpg

    School Work

    Background: PACER Center

    • ADA (1990)

    • Rehab Act (1992):“supportive employment”

    • IDEA (1990 and reauthorized in 1997)

      Individualized Transition Plan (ITP)

    • supplements or replaces the IEP at age 16

    • student becomes a member of the team

    • identify vocational goals

    • addresses training (OJT and volunteer)

    • community agencies and services

    • rehab counselor is important team member

    • evaluation of progress


    Home community l.jpg

    Home Community

    Training (informal &/or formal ILS classes)

    • early responsibility for self-care, hygiene

    • behavior, social skills, and leisure activities

    • homemaking (cooking, cleaning, laundry)

    • financial and budgeting

    • public transportation or adaptive vehicles

    • interview, hire, supervise & fire attendants

      Settings: LRE

    • institutional

    • group homes

    • apartments

    • own home with/without spouse


    Transition in health care l.jpg

    Transition in Health Care

    Preparation

    • Encourage responsibility for own care

    • Should be planned, not crisis initiated

    • Identification of new adult provider(s)

    • Transition interview

    • Self-directed portable records

    • Teaching physical exam

      Process

    • Evaluate readiness*

    • Record sharing and open communication

    • Overlap in care

    • Then let go………. but do not abandon


    Transition in health care barriers l.jpg

    Transition in Health Care Barriers

    • lack of readiness (teen, parent, doctors)

    • strong emotional attachments

    • reluctant adult care providers

    • few multidisciplinary options

    • lack of funding


    Guardianship the alternative to transition l.jpg

    Guardianship: The Alternative to Transition

    • Formal determination is now required at 18 years of age

    • Often triggered by surgery or a hospitalization

    • Requires legal action, not by default

      • petition must be filed

      • court hearing

  • Costs between $500 - $2000


  • Guardianship l.jpg

    Guardianship

    • Is different from conservatorship of the estate

    • Responsible for all decisions except:

      • psychosurgery

      • electric shock therapy

      • sterilization

      • experimental treatments

  • If teen is borderline alternatives

  • Kinship is not the conclusive factor in determining the guardian


  • Overview38 l.jpg

    OVERVIEW

    • Medical Home for CWD

    • Working with the educational system

      • IFSP and early intervention programs

      • IEP and the education system

      • ITP and transition to adulthood

  • Accessing community resources

    • parent educ, advocacy, support

    • community agencies

    • respite and recreation

    • financial

  • Educating the PCP


  • Community supports l.jpg

    Community Supports

    • In the family’s eyes, these are often more critical than medical services when caring for CWD

    • Lack of physician knowledge and expertise often the source of parental discontent

    • Surveys reveal physician-parent mismatch


    Levels of support l.jpg

    Levels of Support

    • Natural

      • family

      • neighbors

      • friends

  • Informal

    • clinic and IEP contacts

    • parent support groups

    • community agencies

    • Literature & Internet

  • Formal Entitlements

    • education (IEP and schools)

    • Medicaid, SSI


  • Slide42 l.jpg

    Formal

    Informal

    Natural


    Informal supports l.jpg

    Informal Supports

    • Parent Literature and Web sites

    • Parent Support Organizations

    • Peer Support Organizations

    • Community Agencies

    • Child Care

    • Respite and Respite Care Waivers

    • Recreation

    • Organized Sports


    Parent literature l.jpg

    Parent Literature

    • Exceptional Parent Magazine

      • Monthly publication (articles, advertisments)

      • Special inserts (spasticity, mitochondrial DO)

      • Family Library

      • Annual Resource Guide

      • Web site

      • Search and Respond

  • Brookes Publishing

  • Woodbine House

  • Medic Publishing

  • AACPDM List


  • Cwd web sites for families l.jpg

    CWD Web Sites for Families

    • Ctr of Children with CI & D

    • Exceptional Parent Magazine

    • Family Voices

    • MUMS (parent support)

    • Natl Ctr for Youth with Disabilities

    • National Parent Network on Disabilities

    • NICHCY

    • Our Kids


    Overview46 l.jpg

    OVERVIEW

    • Medical Home for CWD

    • Working with the educational system

      • IFSP and early intervention programs

      • IEP and the education system

      • ITP and transition to adulthood

  • Accessing community resources

    • parent educ, advocacy, support

    • community agencies

    • respite and recreation

    • financial

  • Educating the PCP


  • Cwd web sites for families47 l.jpg

    CWD Web Sites for Families

    • Ctr of Children with CI & D

    • Exceptional Parent Magazine

    • Family Voices

    • MUMS (parent support)

    • Natl Ctr for Youth with Disabilities

    • National Parent Network on Disabilities

    • NICHCY

    • Our Kids


    Parent support groups l.jpg

    Parent Support Groups

    • Disability-Specific Agencies

      • National: literature, research, referral

        directories, conferences

      • Local: parent-to-parent support,

        meetings, literature

  • Parent Training and Information Ctr

    • Disability rights

    • Advocacy training

  • Family Voices - political advocacy

  • SNAP (Special Needs Adocacy for Parents)

  • Internet Disability Chat Rooms


  • Peer support groups l.jpg

    Peer-Support Groups

    • Friends Health Connection

    • Winners on Wheels

    • NICHCY

    • Disability-Specific Chat Rooms

    • Sib-Shops (206-368-4911)


    Informal supports50 l.jpg

    Informal Supports

    • Parent Literature

    • Parent Support Organizations

    • Peer Support Organizations

    • Community Agencies

    • Child Care

    • Respite and Respite Care Waivers

    • Recreation

    • Organized Sports


    Respite benefits l.jpg

    Respite: Benefits

    • A break from the day to day care-taking responsibilities

    • Supports families in their parenting role

    • Improves stamina, re-energizes parents

    • Allows renewal of spousal relationships

    • Provides special time w/ normal children

    • CSHCN raised at home better outcome

    • CSHSN raised at home cost society less


    Slide52 l.jpg

    1. Respite

    2. Respite

    3. Respite

    4. Respite

    5. Respite

    6. Respite

    7. Respite

    8. Respite

    9. Respite

    10. Respite


    Respite varying needs l.jpg

    Respite: Varying Needs

    • High need

      • dual working parents

      • mobile families (military)

      • no extended family

      • medically fragile child - 24 hr monitoring

      • children with disabilities who do not sleep

      • aggressive children who bite or destroy

  • Low need

    • multiple adult siblings

    • large extended family, neighbors, friends

    • non-ambulatory(but healthy) child w/ CP/SB


  • Respite models l.jpg

    Respite Models

    • Center-based

    • In-home

    • Family Co-op

    • Emergency

    • Hospitality


    Respite waivers l.jpg

    Respite Waivers

    • Goal: to provide the support needed

      to raise the child at home

    • Eligibility: Dx and burden ---not $$$

    • Funding

      • Medically-fragile based funds

      • Cognitive-behavioral based funds

  • Wide variation among states

    • Agencies providing the funds / service

    • Eligibility criteria

    • Amount of funding available

  • Long-waiting lists


  • Recreation l.jpg

    Recreation

    • Travel

      • Travelin Talk

      • Accessible Travel Magazine

      • Access-Able Travel Source

      • S.A.T.H.

  • Theme parks - EP directory

  • National parks

  • Camping*

  • Toys


  • Travel resource information l.jpg

    Travel Resource Information

    Travelin Talk: (615) 552-6670

    Access-Able Travel Source: (303) 232-2979 www.access-able.com

    Access To Travel Magazine: (518) 4394146

    Wheelchair Getaways: (800) 642-2042

    SATH (Society for the Advancement of Travel for the Handicapped):

    (212) 447-7284 www.SATH.org


    Organized sports l.jpg

    Organized Sports

    • Special Olympics

    • Wheel Chair Sports

    • USA CP Athletic Assoc


    Informal supports59 l.jpg

    Informal Supports

    • Parent Literature

    • Parent Support Organizations

    • Peer Support Organizations

    • Community Agencies

    • Child Care

    • Respite and Respite Care Waivers

    • Recreation

    • Organized Sports


    Slide60 l.jpg

    Formal

    Informal

    Natural


    Formal supports l.jpg

    Formal Supports

    • Educational

    • Financial

      • Insurance - Medicaid

      • SSI

      • Special Needs Wills

  • Barrier free environments

  • Personal care assistants

  • Legal assistance


  • Financial assistance l.jpg

    Financial Assistance

    • Health Insurance

    • SSI

    • Special Needs Will

      (Supplemental Trust)


    Health insurance l.jpg

    Health Insurance

    • Medicaid:managed care

    • Title V:limited scope

    • TANF:replaced AFDC

    • SCHIP:# ofuninsured children < 200% poverty level

      $50Bstate block grants

      gov choice: MC or new


    Social security income l.jpg

    Social Security Income

    • Cash assistance program (995,000)

    • Welfare reform - Aug 97

    • New policy - redetermination

      • Categorical Diagnosis

      • Severe Functional Limitation

  • Termination of benefits:mean = 56%

    • Miss = 81%, Texas = 79%

    • Hawaii = 27% Calf = 39%

  • Appeal process: 18% 60% success

  • Remain MC eligible: lower asset criterion


  • Special needs will supplemental trust fund l.jpg

    “Special Needs Will”Supplemental Trust Fund

    • Conventional wills that provide assets disqualify CwD for fed $$

    • Gov agencies can bill inheritance for services - current and past

    • Inheritance quickly exhausted

    • Siblings’ share also at risk

    • Language of a SNW must be clear -

      “Trust is to provide extras -- over & above those resulting from fed $$”


    Formal supports66 l.jpg

    Formal Supports

    • Educational

    • Financial

      • Insurance - Medicaid

      • SSI

      • Special Needs Will

  • Barrier free environments

  • Personal care assistants

  • Legal assistance


  • Education of the pcp l.jpg

    Education of the PCP

    • Medical School Curriculum

    • Residency Training

      • Screening and surveillance

      • Strategies for working w/ educational sys

      • Community supports and strategy for accessing in future assignments

      • Parents as teachers

  • Exceptional Parent Magazine subscription

  • The DDRC at C.A.M.P.


  • Summary l.jpg

    Summary

    • Medical Home for CWD

    • Working with the educational system

      • IFSP and early intervention programs

      • IEP and the education system

      • ITP and transition to adulthood

  • Accessing community resources

    • parent educ, advocacy, support

    • community agencies

    • respite and recreation

    • financial

  • Educating the PCP


  • The role of the french physician 15th century l.jpg

    The Role of the French Physician (15th century)

    • To cure sometimes

    • To relieve often

    • To comfort always


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